I appreciate a doctor who listens

I honestly don’t remember how long I’ve worked with my current one: Dr. White. And that in itself should say something.

When I was diagnosed with epilepsy back in the summer of 2000, I became a patient at Minnesota Epilepsy Group. Dr. Gates (who for some reason got a real kick out of calling me “Dude”) might have worked with me for a very long time if he hadn’t passed away due to a brain tumor.

I think Dr. White may have been my doctor after that, so we may have been working together for over 20 years. We’ve been working together since before he started working in Minnesota. (If I remember right, his contract with his previous employer had a non-compete clause in it, so even though he was working with Minnesota Epilepsy Group, he spent a year working in an office that was just over the border in Hudson, Wisconsin.)

And when I say “working together,” that’s exactly what I mean. Dr. White provides his input, I provide my input, then we come to a collective decision. He’s very knowledgeable when it comes to brain surgery and I don’t remember how long ago he brought it up as an option. I told him that option was on the table, but it was on the back of the table—I wanted to exhaust my medication options first. He completely understood and accepted my decision. He would still tell me about surgical options from time to time, not to push the issue, just so I’d have the information in my head instead of reaching the point of no more medications and then he drops a bomb full of surgical information in my lap, leading to a brief period of full-blown panic before curling up on the floor in the fetal position, weeping silently.

After the surgical conference two weeks ago, he said I should call yesterday to get an update and find out what kind of progress he was making. I called in the morning for two things:

1. What’s the update?
2. I still hadn’t received a call from the neurosurgeon’s office about scheduling my stay in the hospital for the SEEG.

The person at the front desk was going to try to get Dr. White’s assistant on the line so she could talk to me. While I was on hold, I got a call from… Minnesota Epilepsy Group.

I didn’t expect to see that name on my phone’s caller ID, but I answered and it was someone checking in to ask how I was doing, was everything okay, etc. I gave her the same information about getting an update from Dr. White and no call about the SEEG. (During that conversation, the person on the other line from Minnesota Epilepsy Group hung up… oops.)

Later that afternoon, I got a call from Nicole, Dr. White’s assistant. She told me there were two reasons I hadn’t received a call about the SEEG, concerns they had about previous health issues that they thought might need further discussion or possible testing:

1. I had pneumonia in my left lung.
2. I had a pulmonary embolism in my right lung.

Those two things were the holdup. And I was pissed.

Why? Because they were both extremely likely a direct result of my last stay in the hospital for seizure monitoring.

We found out about both problems during different visits to the ER just a few weeks after I got out of the hospital. The pneumonia was likely due to a grand mal seizure and some stuff came up out of my stomach that was quickly inhaled into my lungs. Not only did they find the pneumonia, but after admitting me into the hospital, they eventually discovered a bacterial infection, fluid around my lungs… I was in rough shape.

As for the pulmonary embolism (a blood clot in the lung), during that next stay in the hospital, they scanned my lower legs, then asked if I had any pain down there. No… why? Because they found a lot of clots in my lower legs. As it turns out, when you spend a week and a half in the hospital with a bunch of wires glued to your head and the only times you’re vertical is when someone is there to watch you walk to the bathroom and back (maybe a handful of visits to a chair about ten feet away from the bed as well), the blood in your legs doesn’t move around very much. Guess what happens when blood doesn’t move? Clots. And one of those likely escaped from one of my legs and ended up in my lung.

So I was frustrated that my last stay in the hospital for seizure monitoring was the reason why they were hesitant to schedule my next stay in the hospital for seizure monitoring.

Of course, there’s no point in getting upset with Nicole—she was just passing along the information. I just explained my frustration and she said she’d pass it along to Dr. White. He’s on call this week, which means the clinic will give him Monday and Tuesday off… it was Thursday and I might not hear back from him until Wednesday. Another source of frustration.

But less than two hours later, I got a call. I looked at the caller ID… Dr. White. Nicole had told him about our discussion, so he wanted to call me back as soon as he could. I absolutely want them to be thorough in this process, take precautionary measures… safety is important when it comes to brain surgery, you know? But the fact that the only time those issues have actually been issues were immediately after being in the hospital… so he decided that we should get me on the schedule. It’ll likely be a few months before they’ll be able to get me back into the hospital, which is plenty of time for them to do their due diligence.

Has any progress been made since Thursday? I have no idea. Do I feel better anyway. Absolutely. When the current information is “You’ll eventually get a call from the neurosurgeon’s office for scheduling”… I don’t like floating in Limbo, not knowing when or if something will happen. When the current information is “Your doctor is going to get you on the schedule”… I’m comfortable knowing that it’s now just a question of when.

So to Dr. White, thanks for your call and thanks for understanding. I appreciate the fact that you listen.